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Mmt

MMT

Registered User
Jun 22, 2015
1
I look after a friend with PCA She has probably had this for a number of years. Lately it's prob become more evident. She has the usual difficulties re mobility and trouble determining exactly where things are or shd b. She does need constant care. When she started to make obvious jerking movements I found myself unsure of what was going on. I realise now this is part of the symptom but I wonder what other issues I will face which I am still unaware of. Makes me realise I am still naive regarding the gradual changes that occur. It's v harsh and heartbreaking for those still of sound mind. V hard to accept. With my friend she gets v punishing pains that come and go in her legs and in her left arm which she uses less and less. I wonder if this too is part of the illness? Im always trying to make her use her arm fearing if you don't use it U will loose it's use. But then again I am unclear as to whether my best endeavours are floored ? X
 

Beate

Registered User
May 21, 2014
11,952
London
To be honest, I don't know much about PCA and this factsheet doesn't elaborate: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=135
However, apparently in the later stages it's comparable to Alzheimer's so you might read up on that. It's important to note though that everyone is different and people will present with different ranges of symptoms. If you are ever unsure about a symptom, best ask the doctor to rule anything else out.
 

CollegeGirl

Registered User
Jan 19, 2011
9,524
North East England
Hello MMT. I'm sorry, I don't know what PCA is, but I just wanted to welcome you to the forum and bump your post up a bit. Hopefully others with more experience and knowledge than me will be along shortly. I think it's wonderful that you are looking after your friend.
 

Beate

Registered User
May 21, 2014
11,952
London
Hello MMT. I'm sorry, I don't know what PCA is, but I just wanted to welcome you to the forum and bump your post up a bit. Hopefully others with more experience and knowledge than me will be along shortly. I think it's wonderful that you are looking after your friend.
Posterior cortical atrophy, it's a rarer form of dementia.
 

tre

Registered User
Sep 23, 2008
1,353
Herts
Welcome to Tp. My husband has pca and I have been caring for him since 2008. I would recommend you look at the PCA support group which is run from UCL. The link is

https://www.ucl.ac.uk/drc/support-groups/PCA-support-group

There is heaps of info there and we have also a stages of pca document which you may find useful. The group is very friendly and it is such a relief to speak to someone who understands. The main meetings are held in London but there are also regional meetings at other UK locations.

Tre